Change of Plans
by Gaby Lucas
Executive Director of JBC
The day was here. I couldn’t believe I was finally becoming
a Mom. I had dreamed of this day for years. I had so many plans for my child…
she would certainly become a dancer or choreographer just like me;
she would be Bilingual since I came from Mexico; she would love to perform and
surely, be the most social little girl on the block.
Anna was a very angry baby. I could not find ways to comfort
her, to soothe her. Nothing seemed to calm her down, not the stroller, the car,
nor the music. From the very beginning, the feeling of a strange place, or a
strange face would cause a huge meltdown in my daughter’s routine. I remember
having to quit everything: my jobs, my social gatherings with friends, even my
visitors. I quit it all, except my job as choreographer for the Jellybean
The Jellybean Conspiracy had become an extremely important
part of who I was or who I wanted to be. It had introduced me to a world where
acceptance and kindness were our most valuable traits as human beings. Having
this job was by far the most transformative chapter in my professional life.
In my eyes, Anna was the most beautiful 3 year old angel on
earth. She was so interesting. She could spend hours drawing the same line
patterns over the same sheet of paper, she organized every single miniature toy
in a perfectly straight line, she smiled when tickled, she got excited when
given her favorite foods…but she never looked at us straight in the eye, she
didn’t like having visitors and she was not appropriately communicating
verbally with us. Naively, we attributed this issue to the fact that Anna was
being brought up in a bilingual household and this could certainly be delaying
her vocabulary process.
Underneath, I knew in my heart my adorable Anna was not
developing typically. The four month waiting period for her to be diagnosed by
the hospital was debilitating me emotionally. I went through an unimaginable
roller coaster of emotions. I didn’t know anyone close who had a child with
Autism that I could talk to. And still, nothing could have prepared me for my
daughter’s diagnosis better than my own job.
The Jellybean Conspiracy Show was performed by Lawrence High School, KS on October 4th,
2007. After almost 5 years of working with the Jellybean Conspiracy Project,
nothing personally hit home as much as that one particular production did. That
night the script had been adapted to showcase the very special talents of our
main actor “Johnny”. Johnny had autism and the script- which I had heard at least
50 times before- went from focusing on Down syndrome to autism. I remember
listening to the fabulous young actors talk about “how someone with autism had
wonderful gifts to share” and how “everything was going to be all right”. I
thought I had already mastered the skill of not crying during all Jellybean
performances, but after 5 years, I cried during the entire production. My
emotions were getting me ready to hear the inevitable news the following
“We are sorry; indeed your child has Autism”. In my mind, I
thought I was ready, I was the one mom who was going to take the news like a
true professional, I wasn’t going to cry, I promised myself I wasn’t going to
cry, but there I was…being given a huge box of tissues from across the desk. I
hated that. I hated that whole situation, I hated that space, and I hated not
hearing from those doctors that there could be a chance that my daughter wasn’t
autistic. I was mad. There was nothing else to do, but to take the yellow
envelope full of resource information they had given me and try to calm down so
my daughter wouldn’t see me shaking. She was there, happily playing with the
wooden train wheels, completely unaware I had just been given this new
information that changed all my expectations for her future.
From here on, the Jellybean Conspiracy Project became my
shield. I felt such pleasure on not only sharing my passion for choreography
and dance with young actors, but also passing along the beautiful original
message Dr. Howard Martin believes in: “no child ever came into this world
without a wonderful gift to share, and it is up to all of us to find it”. (Anna
too, would be sharing her gifts with the world).
As months passed, we became much more comfortable with our
daughter’s diagnosis; it no longer became a negative, painful, numbing word, it
became our everyday reality. It became the source of laughter and eventually a
reason to celebrate. We learned autism, most of the time, comes accompanied by
unique traits, in occasion genius like traits, that although hard to comprehend
for the typical person, it could create a source of intellectual greatness.
Emotionally, I was holding on like a champ, until that one day at the
playground. That one sunny afternoon I turned into a crying baby.
Just like any typical child, children with autism are all different. Their needs, wants and abilities
cover a huge spectrum. Many of them show self stimulatory behaviors –or stims.
Anna’s stim has always been this particular behavior: running back and forth while humming
really loud and skipping as if she was really excited. All was perfect, until little blond girl in the park
stared at her with disbelief. She couldn’t take her eyes off of her. She then asked me while pointing
at my daughter: “What is wrong with her?” I felt numb inside. “There is nothing wrong with her” I said,
“she just loves to run back and forth; that’s what makes her happy”.
“What is wrong with her? What is wrong with her?” I kept
repeating those words inside my head while taking my daughter to the car so no
one could see how much those words had made a huge hole in my heart. WRONG:
Such a negative connotation. Should it really ever be applied to a person?
Those words kept ringing in my ear so strongly that I began forming lyrics
about those feelings. Those lyrics are now the songs featured in this project
so dear to my heart.
I hope No Such Thing As Normal can become a vehicle that brings autism awareness,
teaches tolerance and thoughtful inclusion among elementary students and their